January 2, 2016
To: Centers for Medicare & Medicaid Services (CMS)
From: Advocates for Informed Choice (AIC)
Re: National Coverage Analysis (NCA) for Gender Dysphoria
and Gender Reassignment Surgery (CAG-00446N)
Submitted electronically at:
These comments are submitted on behalf of Advocates for Informed Choice. We are an international organization and the only US organization providing legal advocacy for children and youth with intersex traits/DSD (differences or disorders of sex development). (More information can be found at: www.aiclegal.org.)
CMS posed the broad question: “… whether gender reassignment surgery and gender dysphoria treatments can boost health outcomes in the US” in the context of Medicaid coverage of care for trans people. Our comments here focus on the needs of intersex people, who are born with atypical reproductive characteristics. In standards of care for typical children with gender dysphoria (GD), timing of interventions is based on the recognition that GD may not persist into adulthood (1). In direct contrast, intersex babies whose genital appearance does not fit a clear male or female binary are assigned a gender, and often subjected to irreversible cosmetic genital surgery before they are old enough to express their gender identity or to consent. (2, 3) When children’s eventual gender identity is discordant with their assigned gender, this can be a form of involuntary sex reassignment surgery. In both GD or DSD, gender reassignment surgery and hormonal therapy that changes genital appearance is not appropriate in unconsenting young children, but may benefit adolescents and adults who understand and desire it. Our concerns regarding Medicaid coverage of current clinical practices for intersex/DSD care include uncertain gender outcomes in young children subjected to genital surgery; unproved benefits of surgery; risks including anesthetic neurotoxicity; lack of coverage of psychosocial care; and international standards declaring that surgery on unconsenting children is a human rights violation.
An estimated 1-2% of babies are born with intersex traits, reproductive or sexual anatomy, and/or chromosome pattern, that do not fit typical definitions of male or female. These traits are typically referred to in medical terminology as DSD. Diagnoses include 46, XX “masculinizing/virilizing” congenital adrenal hyperplasia (CAH), androgen insensitivity syndrome (AIS), partial and complete gonadal dysgenesis (GD), Klinefelter syndrome (KS), Turner syndrome (TS), hypospadias, epispadias and others. (4)
The Institute of Medicine (IOM) and National Institutes of Health (NIH) recognize the intersex community as a sexual and gender minority that is underserved and vulnerable to healthcare discrimination, similar to lesbian, gay, bisexual and transgender people (5, 6; also see attached "AIC HHS Non-discrimination Comment 11.6.15"). Historically, a medicalized model of intersex care prescribed irreversible surgical cosmetic “normalization” of “ambiguous” genitals in infancy. (4) While care for some intersex/DSD conditions has changed, genitoplasty is still performed on some children too young to express their gender identity. (2) In 46, XX CAH, lack of an adrenal enzyme produces androgens that can cause genital difference in children with XX chromosomes. Some children may have typical male genitals. In spite of recent scholarship suggesting that female-assigned children show at least as much cross-gender identification (CGI) as typical girls who meet criteria for referral to a gender clinic, with persistence into adulthood, genital surgery is still commonly performed in 46, XX CAH (7). In addition to discordant gender outcomes, other negative consequences of nonconsensual genital surgery can include involuntary sterilization and loss of sexual function and sensitivity (8, 9). Despite 50 years of technical improvement, the benefits of early childhood surgery remain unproved (10, 11). New global recommendations to defer non-essential surgery are based on risks of anesthetic neurotoxicity to the developing brain, especially in young children (12, 13), representing another potential harm of early childhood cosmetic genital surgery. In a non-medicalized (14), psychosocial model promoted by intersex advocates, genital differences are considered natural variations along a spectrum of difference. While isolation and misunderstanding can cause distress for families and individuals, intersex in and of itself does not compromise health and wellbeing.
Postponing irreversible surgical and hormonal intervention in a psychoeducational model of care supports ethical obligations to ensure children’s right to physical autonomy and an “open future” in which they make their own decisions about their bodies (15). The United Nations High Commissioner for Human Rights affirms that, “our diversity – the differences between our experiences and perspectives, as well as the shapes of our bodies – is something that we should celebrate and protect, in all its forms.” (16) We urge the Department of Health and Human Services to prioritize ethical considerations in light of widespread international condemnation of non-consensual genital surgery as a violation of human rights, and possibly a form of medical torture, by organizations including the United Nations (16-18; also see attachment "AIC UN Special Rapporteur for Health").
Based on these considerations, Advocates for Informed Choice recommends that Medicaid provide routine funding of expectant management for intersex/DSD that promotes health and wellbeing, including early supportive interventions for families, such as education and psychosocial and peer support starting at the time of diagnosis (11). Routine reimbursement of puberty blockers to postpone puberty is urgently needed for children whose gender identity may be discordant with their originally assigned gender. These children also require flexible access to sex hormones. Gender-affirming surgery should be covered for adolescents and adults who can fully comprehend the risks and benefits.
Arlene B. Baratz MD
Chair, Medical and Research Policy Committee for Advocates for Informed Choice
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